Allison

Update: We are saddened to announce that Allison died peacefully at her home on Sunday, September 11, at 1:40 pm.

We had the pleasure of meeting sweet Allison and her beautiful family on Saturday, September 3, 2011. At this time Allison told us she wanted to get out of the house (she’s been stuck inside with limited mobility for quite some time). Her dream was a Build A Bear Workshop shopping spree! Allison also requested a very special bear, a dragon that will be the signature bear for Cook Children’s Build A Bear Workshop. As of now, the dragon is not even in production and only a hand full of prototypes are in existence. I am happy to say that we were able to make Allison’s dream a reality! Due to her unexpected decline Allison was unable to visit the Build A Bear Workshop, but we brought Build A Bear to her! Allison is now a proud bear mommy to over 40 bears, including Mr. Dragon! We had the pleasure of delivering these special bears on Saturday, September 10, 2011 along with pink and purple balloons (Alli’s favorite colors), an extra special life size teddy, a chocolate teddy bear cake, dressed as a fisherman, just like Miss Allison and lunch from El Fenix, Allison’s special request of Tamales and queso.

Allison had been treated for headaches and migraines for some time. On Thursday, March 4, 2010, Allison had an increase in symptoms and was taken to the ER on Saturday, March 6th. It was on this day that the Long family would be changed forever. Tests were performed, and it was determined that the cause of Allison’s symptoms was a brain tumor. Allison was diagnosed with a rare, inoperable brain tumor known as a diffuse intrinsic pontine glioma (DIPG). Allison was 10 years 3 months old at the time of diagnosis. Our love and prayers are with the Long family during this difficult time.

From Mom’s Blog September 6, 2011
This tumor is an ugly thing, and is slowly taking more and more from our brave girl. Allison has for the most part lost the use of her right hand and arm, and this is very frustrating for her as she is right handed. We are encouraging her to try to use her left hand, which she does, and she constantly pushes us away if we try to help her, she is so independent and wants to do things herself, no matter how difficult it is for her. Her determination and will are amazing. Eating and drinking are also difficult, but she does things her way and makes it work. She still has a passion for pickles and has them daily — she will sometimes nibble at one for several hours. She had a rough afternoon yesterday and we ended up calling a nurse out, and adjustments were made to her pain medication, and we were able to get things back under control. The down side was that she slept about 12 hours after the episode, and developed severe congestion today. We contacted her medical team again, and they have been taking care of her thru the evening to get her comfortable again.

From Mom’s Blog September 9, 2011
The last few days have been hard. We know that the coming days are going to be harder. Our beautiful girl is slipping away from us and as much as we want to, there is little we can do to prevent this. This past Tuesday marked 18 months since that day in March when we received the devastating news that Allison had a brain tumor. We have had so much more time that we thought we would, but it is still not enough – it will never be enough. Allison’s condition has deteriorated rapidly over the last 7 days, and we are doing our best to make sure she is comfortable. She is no longer eating, and only drinking small sips of water. She slept almost all of the last 24 hours – I awoke at about 4:30am and heard her talking to Larry and jumped out of bed to see her. She has been very thirsty this morning, but drinking is a struggle, and she coughs a lot. Talking is also very difficult, and she is trying so hard to talk to us to tell us what she needs. Her pain seems to be under control, and we are thankful for that.